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Thanks Joe for taking the time to post about an issue so important to so many of us...I have learned alot and gotten a great deal of support from folks like you, Moffie, RAB, Alan, Jonathan, Ann, Newt and so many others here.

This year in particular I have really been considering so many of the issues you mention...I am deeply concerned about meds that may soon stop working and facing my own mortality...A few years back I thought I had alot more time left and now I am mentally preparing myself for issues you mention, such as getting older and having to face serious illness and death.

A forum for those of us who are long term survivors would give us a special place to air our concerns and get info and support and comfort...Hopefully this won't further fragment the forums and put too much on the plate, so to speak.

Jody

I too have learnt so much from so many folk here, who I realise have not been posting so frequently recently. And I have missed their input and would love to see a turnaround in that. I totally agree with everything that Jody said here.

On reflection, I guess I made the mistake of focusing on my one concern instead of focusing on all the good that could come out of a new forum such as the one being proposed. Maybe thatís because the forums have unfortunately been peppered so much with such an unpleasant sense of divide recently. And I guess my wishes for folk to work at getting LW more Ďtogetherí again stem from the remnants of a not-quite-beaten-yet inner desire for utopia. But, saying that, Iím much more of a realist nowadays.

I am totally onboard with the concept of a safe area where fears and concerns can be voiced freely, questions can be asked without fear of upsetting others and where information can be shared. I guess I just made the wrong assumption that that is what LW is about. As has been pointed out, it sounds like it used to be.

If a new forum is what it takes to get fine folk like you Joe, Moffie, Jody, Jonathan, Alan and many others posting their reality again, no holds bar, then I fully embrace the idea and look forward to hearing from everyone again.

If the new forum is realised, I for one will be adding it to my list of forums that I frequent.

Melia

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/\___/\ /\__/\(=' . '=) (=' . '=)(,,,_ ,,,)/ (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

For the record, up to now, I haven't posted in this thread because I had actually written an email to my fellow moderators the morning this thread was posted, before this thread was posted, saying pretty much the same thing as Joe and Tim (thunter) have. It was an amazing case of synchronicity that three of us would come up with the same idea on the same day, independently of each other. In a way, it was kinda "twilight zone" weird.

I didn't post here because I didn't want anyone to think this forum was a done deal, when it isn't. Just because I'm a moderator and also came up with the idea doesn't mean I pull any more weight than other forum members because at the end of the day, I'm just another voice in the crowd. I was a member here before I was a moderator and in my heart I am still a member first and foremost. The moderator bit is just a service I give to the community.

So yeah, I support this idea but this idea still needs the support of other forum members if it is to become a reality. Keep posting - and it would be good to hear from more of you who have yet to post your feelings on this matter.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

very new to this site. And a long term survivor.Love the idea of a forum for discussion with fellow long term surviviors. There are 102 posts before me.Most all of them supporting the creation of a site.Curious, how many posts or what does it take to create the site?If it is a space issue it seems like it would be better to use this space for real discussion about the topic instead of speculation about whether the site should exist.I vote for creating the site and let it find it's own life. Like all sites it will find it's meaning and thrive as long as it is needed and supported.

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If you recognize me please honor my need to be anonymous here to interact on a personal level.

I'm all for anything that allows people to get more out of this site. If the LTSs who've contributed to this thread feel they need a new forum, then let them have it.

However, I feel really sad that long-term survivors feel that they need the "safe space" of a LTS forum. Surely all of these board should be a safe space for everybody? And if they're not, rather than creating new sections of the site so that those who don't have the energy, or feel marginalised by conflict or discord on the current boards can move across to virgin pastures with a new set of rules centred on respect and tolerance why don't we have a discussion about a new set of rules for the ENTIRE SITE, with perhaps the exclusion of the Off-Topic forum if people want to rough-house.

As a newbie, I draw huge strength and support from some of the LTSs who post on this board. Just look at Moffie's post in response to my post "struggling". I refuse to allow the fact that HIV for me might be a very different (easier) disease to how it has been for Moffie, or Jonathan, or Joe manifest itself by belittling their issues or concerns, and what they have to live with. I would urge other members to do the same.

I would also urge the LTSs to post whatever they feel like on the "Living with HIV" forum - I hate the idea that some people feel that they can't post a thread about an issue which is affecting them. Surely a thread posted by an LTS about an LTS-related health issue would primarily draw contributions from other LTSs?! Although I would read such a thread, my only contribution as a newbie would be support/commiseration. I can't believe that anybody would go into such a thread purely to be contradictory and disrespectful. But I would miss the education I feel I get from the oldies, and the life experience that's there.

I think it is inevitable that if this additional forum was created, more and more of that stuff would be hived off, seperate and exclusive. Although the forum wouldn't be locked, there would be a de facto exclusion of newbies. I'd certainly feel excluded, and worried about asking a question, or posting, in a thread in that forum.

I don't feel I've articulated myself very well! I'm new here, and don't know what it was like before. The gist my arguement is: do we want to formalise the divisions that dominate many threads around here (and shouldn't)? Maybe it's time we broadened the discussion about how ALL of us can get the most out of every area of these forums.

reading some of the comments here, this seems like it will be a rather 'depressing' forum.

I don't say that disparigingly, but it kinda seems more like a 'dying with hiv' forum. Not that I don't think it's needed, it's just very grim.

very grim indeed.

and that makes the dingo sad.

Bailey and Milker,

Yes! you are both right. However, I want to make a really important point here that you might not have thought of.

Many of us live lives that are really scarry to those who are new to this bug. It doesn't really scare us anymore, and at the same time, sometimes it really does. Many of the "presenters" on this thread are doing so with an almost desperate tone to them. I concur that to the uninitiated, this forum might look on the surface a sort of stopping point on the way to the grave, but if you think about it, it will be a place where we can come and without interruption; discuss that very scenario without having to stand up and say "shut the fuck up and quit telling me that my body is going to get better" when we all know for a fact that some of our bodies are on the decline that will ultimately lead us to that final curtain.

We currently cannot do so in the Living forum and to prove that, please re-read some of my recent threads dealing with my own current state. Shit Bailey, I have never even considered dying very soon until this last bout of drug failure, but the last six months have been hell, and to not have the freedom to share it and question my own decisions, judgements and plans with those who know where I am best, leaves me with an emptiness that only a place like we are discussing could possibly fill.

Unfortunately, reality bites, and HIV is not really fun, but we can have fun WITH HIV, and still be human enough to consider the plethora of nasties that can be dished out by this bug. Do me a favor Bailey, please remember prancing down the street with all the LTS's that you met face to face in Montreal and Toronto. Now, were we morose? Did we fill our days with talk of puking, coffins and funerals. No we didn't, and I think that this forum might be just a really big surprise to many of the readers as the tone would often be very humorous and totally fun. Remember, many of us have learned that humor has been one of our best pieces of artillery with fighting this disease. It seems that humor creates chemicals in our brains and bodies that strengthen our immune systems and at the same time, give us strength to fight on.

I do see your point, but please consider the variety, and the tenacity of the LTS on this very site. Please recall the struggles of Nancy and her husband, and the fight she put up to cancer on top of her HIV. She has told me that she would never return here to be mocked, or read of others being mocked again, and in my mind, if we can create a place where Nancy feels comfortable to return here; then we have done the right and good thing.

Sorry for so many keystrokes, I just couldn't sleep and had to get up to puke up my dinner from last night. After this, maybe I can return to bed and get some more shuteye.

Love you all at 3;30am!

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The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

"I can't believe that anybody would go into such a thread purely to be contradictory and disrespectful. "

Thanks for your thoughts, but this stands out and I think you should know that I have my own set of "stalkers" that live to ruin my posts. They follow me like a hawk and pounce almost every time I post anything. Unfortunately, we have long since past the "safe zone" for many of us, and the resources that you are missing out on from many LTS's who only now lurk, is astonishing. I know you will be very surprised if this comes about. There are many people who you would love to meet here, but will never if something like this doesn't happen.

Love,

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The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

I concur that to the uninitiated, this forum might look on the surface a sort of stopping point on the way to the grave, but if you think about it, it will be a place where we can come and without interruption; discuss that very scenario without having to stand up and say "shut the fuck up and quit telling me that my body is going to get better" when we all know for a fact that some of our bodies are on the decline that will ultimately lead us to that final curtain.

Which makes the need for this suggested forum all the clearer to me, Moffie. If folks find the subject depressing, then they probably won't look, or if they do will quickly exit that area. I donít see this as being divisive in any way, just practical common sense. If I post in an LTS forum, I certainly wouldnít stop posting in the others.

After giving this considerable thought, and I truly hope that clear terms for posting in an LTS forum will be laid out in a welcome thread off the top. Iíve been a member of another forum site since about 1999, and as an example of what I mean Iíll include the (edited) terms they use there.

The following will really annoy us if they occur in [this] forum. You will receive one warning, after which your user rights will be suspended:

1. Flaming (posting subjects deliberately designed to incite anger, rudeness etc.). We really don't like inflammatory posts that are posted solely for attention-grabbing. Nor is it cool to bolster your argument with another member by discussing their personal hygiene, looks, or what they do with their dogs.

2. Spamming, which we define as either a) posting the same thing over and over again in the same thread or forum, or across forums, or b) posting excessively in a short time with brief posts of just a few words.

Repeated posts void of substantive content or relevance to the discussion or forum may also be considered spam. It may be considered spamming if you post too many threads at one time (even though they may be about different subjects). Generally, posting up to three or four threads at a time is okay; more than that and you run the risk of spamming.

3. Regularly posting topics [here] that belong in [other] forums. If you do this regularly, expecting us to take care of it, you will be warned and then suspended.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

I think this is a good idea...it reflects reality. I've found over the years that there can exist a demarcation between those HIV asymptomatic and those HIV symptomatic.

For example...in my own case I don't have infinite energy. I have encountered over the years numerous asymptomatic guys who seemingly have trouble understanding that I can't be on the go all day and all night. I can't go mountain climbing and hiking...other strenuous stuff. I've gotten the "What's the matter?"..."Why are you tired?"...etc. I don't blame them, they've just not experienced it and don't understand evidently. Also I have some wasting and that has been equally if not more off-putting to healthy HIVers whether sexually or even socially in some instances.

So there are in fact specific issues with which LTSs grapple. Anyone else experienced what I relate?

I don't blame them, they've just not experienced it and don't understand evidently.Also I have some wasting and that has been equally if not more off-putting to healthy HIVers whether sexually or even socially in some instances.

So there are in fact specific issues with which LTSs grapple. Anyone else experienced what I relate?

Definitely Gary, not specifically wasting (yet) but certainly periods of fatigue and there are other matters that come along as immunity fails us. A few times shingles, seborrheic dermatitis, and the most painful so far Ė anal warts out of control. Six months of sheer agony day and night until I could get laser surgery for them. Thankfully they havenít returned yet and hopefully wonít, but thatís the thing Ė we just donít know how HIV/AIDS is going to progress and it would be good to have support through a more serious and secure environment to discuss things as they develop.

As I look through the Welcome thread to the Living With forum I see all of the rules that are being proposed for the new forum already here in this forum. These rules being using common courtesy, no flaming, no personal attacks etc,. These rules are already a part of this forum. Is there a reason they have not been enforced and allowed so many of you to become unhappy with it? Mockery and juvenile hurtful behavior shouldn't be allowed in ANY of the forums.

Matt and Pozinbama bring up very good points. These forums have become hateful, unpleasant, and difficult to wade through in an effort to find something meaningful with regards to HIV/AIDS. The rule are already in place just not enforced. If a new forum with rules that are adhered to is the answer please bring it. I have complained loud and often about a small vocal minority making it nearly impossible to post anything here. It seems that others are finally speaking up.

I personally fall into the "older member" category age wise, though I was only diagnosed 3 years ago I was diagnosed at a point I was nearly dead. The ID doc speculates I have been positive for 15+ years. I hope this qualifies me for a new and hopefully self moderated place to discuss the issues that bring me here. AIDS and the struggles to live with AIDS.

For clarification: That last statemen wasn't necessarily meant as a shot at the moderators. I simply believe the community can self police better than 2 or 3 moderators

Those are very good points. Perhaps IF the new forum comes about it would be best to have the guidelines more closely adhered to. Otherwise it will be rendered as chaotic as some threads in the ďLiving WithĒ forum seem to get, and therefore pointless really.

Frankly I'm surprised that there hasn't been a LTS section in these forums ALREADY. It's such a no-brainer... like setting up "gifted" programs in public schools. All it means is that the kids get one special class... they're with the rest of the kids the remainder of the day.

If anything, and I hate to make an accusation, the non-LTS that are questioning the validity of this need on these forums are perhaps being a tad selfish. They will still be able to read the posts, and if it raises any questions in their own minds in regards to their own situation they can certainly go into "Living With" and start a new thread for further discussion. I'm sure the majority of LTS'ers will still be participating on the rest of the forum... I know I will be. However, I'm sure there will be many LTS'ers who will mostly congregate in the proposed new LTS section -- so? If that's to be their comfort zone who is to deny them this space?

Certainly in light of the new "Womens" section of the forum there's not really any way to deny this current proposal in any spirit of fairness.

Minding a forum as large as this at it's best is like herding cats. However, I believe I have witnessed a very positive upturn in the past 48 hours. All it took was a simple request to eliminate the posting of pics in Living With to expose some members for what they really were. The calm that has extended over this site this Easter weekend is quite miraculous, nothing short of a certain someone rising from the grave. No extra rules were needed, no threats, just a realization that enough was enough and a very disruptive cabal needed a little time out.

I for one find the forums to be very welcoming...differences yes, personalities you bet...5892 at last count. But around here eventually the wheat gets separated from the chaff and the cream always rises to the top. I hope we don't put the cart before the horse with this new forum by getting caught up with rules and regulations.

I would guess there are a number of things about my life and health that might seem depressing and bleak to a newly-infected or asymptomatic person, but (like Moffie stated about fear) they aren't so depressing or bleak to me. They just sort of "are". They've accumulated over many years of infection and med regimens, and I've had a lot of time to adjust to any limitations.

There also seems to be a different mindset for many of us who were diagnosed pre-HAART, and who indeed lived through the years of enormous losses. Some wisdom and insights come with that mindset--but so does a helluva lot of baggage.

It would be cool to have a place to talk about this stuff without the "I'm living with HIV/AIDS, not dying from it" and "hit by a bus" commentary.

Minding a forum as large as this at it's best is like herding cats. However, I believe I have witnessed a very positive upturn in the past 48 hours. All it took was a simple request to eliminate the posting of pics in Living With to expose some members for what they really were. The calm that has extended over this site this Easter weekend is quite miraculous, nothing short of a certain someone rising from the grave. No extra rules were needed, no threats, just a realization that enough was enough and a very disruptive cabal needed a little time out.

I for one find the forums to be very welcoming...differences yes, personalities you bet...5892 at last count. But around here eventually the wheat gets separated from the chaff and the cream always rises to the top. I hope we don't put the cart before the horse with this new forum by getting caught up with rules and regulations.

Dachshund, I am blown away by the beauty of your post. Thank you. Yup, about rules 'n' regs, let's remember the biggie essence which can be summed up with two powerful words: SAFE HAVEN.

Everyone needs to see Moffie's post #106. I'll make a prediction: If this new forum becomes a reality, AIDSmeds will see problems reduced by 60% or greater

2. Spamming, which we define as either a) posting the same thing over and over again in the same thread or forum, or across forums, or b) posting excessively in a short time with brief posts of just a few words.

Repeated posts void of substantive content or relevance to the discussion or forum may also be considered spam. It may be considered spamming if you post too many threads at one time (even though they may be about different subjects). Generally, posting up to three or four threads at a time is okay; more than that and you run the risk of spamming.

Hi all,

firstly, could such a rule be applied across the forums here? Maybe by doing so we could avoid the relentless sniping of late to repeat itself. If there is a need for a space where people can throw all sorts of things at each other in humorous and much less funny ways, maybe we should consider a chat room too? Some of the exchanges that took place recently were more akin to knee-jerk texting than conversation... But I understand that rapid messaging is a form of communication that exists today and as it appeals to (usually younger) people, why not have a space for that? It seems to me that the living with forum could then return to being the more reassuring place it has been at most times.

secondly, I am 47 and nearly 5 years positive, already on meds and experiencing some effects that others have had much later after their infection. So I do not quite qualify as either old timer or long term survivor though I do look forward to entering these categories one day. Every experience shared here about this disease is valuable to me, but ever since I joined this place I found that the posts of long term survivors were those that gave me more hope whilst at the same time they gave me a constant reality check. It never bothered me that those posts where mixed with others in the Living with forum, until that forum became inundated with topics that, to me at least, belonged in the off topic class, and when valid topics became infected with vitriolic one liners that led nowhere. Nowhere constructive and supportive.

So if the long term survivors here feel the need for a dedicated forum, I respect their choice and will be an avid reader, even though I believe that mixing with the crowds is a better approach. I realize that this approach can only work within the boundaries of mutual respect, something that was lost in many posts recently.

I think many of the younger members here do have a great deal to offer, but as long term survivors our perspective is unique...Perhaps Jim (fiskernish) who has not posted as much and Ric (Rick Wilke) would post more often regarding their years of experience in battling HIV.

One great lady I forgot to mention in my earlier post (shame on my brain-fog) is Jan (Anniebc) whose kind, compassionate knowledge and unrequited love has meant a great deal to me and many others here at the forums.

Jody

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"Wake up to find out that you are the eyes of the world". "Try to discover that you are the song that the morning brings."

As I look through the Welcome thread to the Living With forum I see all of the rules that are being proposed for the new forum already here in this forum. These rules being using common courtesy, no flaming, no personal attacks etc,. These rules are already a part of this forum. Is there a reason they have not been enforced and allowed so many of you to become unhappy with it? Mockery and juvenile hurtful behavior shouldn't be allowed in ANY of the forums.

poz, the Moderators recently realigned the Living With forum to avoid this behavior and that seems to have worked well so far. Most of this have been moved to Off Topic. I expect people in the LTS forum to behave correctly. I know I will if I have a question related to LTS.

You know, this place and certain people on it have become so important to me. I was out all afternoon but the main thing on my mind was this thread.

The more I thought about it, the more convinced I was: how can we not have a forum for the long term survivors here?

As well as the general Living With forum, we have one for the newly infected, one for those who have people in their lives who are infected and now we have one for women who are infected.

If living with hiv is indeed a journey, which many on here (myself included) profess it is. Then, as much as none of us may like it, the reality is this: a journey has a beginning, a middle and an end. I think it was Alan who pointed out (in another thread) that we are all at different points on our journeys. So, bearing that in mind, I think the forums should provide for wherever people are at on their journey.

There are many members here who are closer to the final destination who have the right to be able to frankly discuss where they've been, where they are now and where they are/may be heading. They deserve a safe place where they can do that.

Canít type anymoreÖ

Melia

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/\___/\ /\__/\(=' . '=) (=' . '=)(,,,_ ,,,)/ (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

The more I thought about it, the more convinced I was: how can we not have a forum for the long term survivors here?

Exactly my feelings. The more I've thought about it, the more glaring it is. There are just SO many more issues the longer you live with HIV... this is a no-brainer and should not offend those on these boards with more recent infections. I'm sure it would not be unusual on a cancer web board for there to be a section for the newly diagnosed and those others experiencing later year remission. Let's face it, by and large HIV is on a timeline, and the further you go along the more likely you are to have multiple issues, and from my experience once you have the first serious issue it seems to multiply quite quickly and all of a sudden you're seeing a vast array of specialists, etc., all greatly complicating how you juggle your work schedule and various other tangential life issues.

If anything the newly infected should VALUE having this new section, as it will serve as an impetus for the LTS's to more fully discuss all of this that may not have been voiced previously, and they can studiously make mental notes and be able to address these things when it eventually, or rather potentially, may happen to them 10 years from now.

Personally I googled a certain topic last summer and found this place, but basically stayed simply for the information of other similar LTS, as I personally only know one other such individual who exceeds my length of infection. And he's not much help at all frankly and rarely has been, though I've known him for 15 years. He's not the most pro-active with his HIV and hasn't had hardly any issues at all with his infection... and actually right now is on a self-prescribed drug holiday and has been for 2 years.

As I look through the Welcome thread to the Living With forum I see all of the rules that are being proposed for the new forum already here in this forum. These rules being using common courtesy, no flaming, no personal attacks etc,. These rules are already a part of this forum. Is there a reason they have not been enforced and allowed so many of you to become unhappy with it? Mockery and juvenile hurtful behavior shouldn't be allowed in ANY of the forums.

Helo Poz,

You're absolutely right !! Many of the rules are already in effect, for all the forums. Unfortunatley though , things do get by until the moderators are able to detect it.

I believe that if a new forum is created, your going to see a lot less of that behavior. Why ? Because it simply won't be tolerated, in this forum !!. Anything volatile, simply won't go.... This is exactly what most of us are stating when we mean a "safe place"

Anyway those are just some of my thoughts. I got to go to bed....Got to get up for work tonight.

For example...in my own case I don't have infinite energy. I have encountered over the years numerous asymptomatic guys who seemingly have trouble understanding that I can't be on the go all day and all night. I can't go mountain climbing and hiking...other strenuous stuff. I've gotten the "What's the matter?"..."Why are you tired?"...etc. I don't blame them, they've just not experienced it and don't understand evidently.

So there are in fact specific issues with which LTSs grapple. Anyone else experienced what I relate?

Gary

thanks for posting garyi experience the tiredness sometimes. wondering if you can tell the difference between hiv related and just working long hours or staying up all nighti'm having a hard time telling the differenceyour advice is appreciated

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If you recognize me please honor my need to be anonymous here to interact on a personal level.

I would like to clarify two points about the proposed new forum. The first being that right now, most poz people who enter the site (Peter correct me if I am wrong) will generally go to either the I Just Tested or Living forums. As discussed earlier the Living forum is becoming like somewhat of a gateway for pozzies to start exploring this site and I believe we have a duty to keep some of the more somber or "serious" discussions in a different forum.

My reason for this is simple. We will never know how many potential members we lose each day, because they stumble into the wrong forum, or what about the poor soul who has the misfortune to click on a thread that deals death qnd dying. I imagine if I read such posts when I first tested I would run for the hills as well. However as currently structured, there is no place else for such somber discussions except for the Living forum.

But you all seem to miss the most obvious reason for this new forum. All of you who are eventually to become Long-Term Survivors can monitor the issues that some of believe are paramount in maintaining your health. I would hope that if you were in the forum and had some experience, with an issue being discussed, that you would post in that thread. None of us know it all and I believe that the more we spread out the forums, by interest, the more steady they will remain.

As to those who mention the rules already in place, yes we propose the same structure, however we believe that our main difference will be the absolute intolerance for denigrating comments to the forum members. Many of you remember the days before our moderators had to don armor and we only needed them in extreme cases, because we took care of our own.

That is all that we now ask. Give us a place so we can take care of our own.

Like Joe has mentioned before, notice the (still) absent disrespect flowing through this thread. It has spawned some of the most beautiful and heartfelt posts I have read on here to date.

Leave it to Melia to once again to bring a point into crystal clear focus: it makes perfect sense chronologically to have a third tier to balance out the order of discussion...Just Tested, Living With and Long Term Survivors. Something about viewing those three titles together like that brings about such a hopeful feeling to me. Contrary to being divisive, it creates a sense of cohesion to me personally.

The point Joe mentioned just above wasn't lost on me. I look to this forum as offering both a glimpse into our past as a community bonded by the experience of HIV/AIDS and perhaps a look towards our possible futures.

I am not a long term survivor. I hope to get to that point one day, but I am fairly recent in my diagnosis - over one year, less than two. I am, however, past the mid-century mark, and feel a lot more in common with the older folks than the younger ones. I have been on meds from the start, and not one pill a day, but rather a fairly complex regimen. In addition, I look upon HIV as the extremely serious condition that it is, and find myself annoyed with those who do not. Consequently, I find myself reticent to post questions in LW regarding any sort of problems I may be facing.

When certain conditions arise, I always wonder if it is the virus or just the aging process. If I have a question or a concern, I'd like to have substantive, thoughtful answers - or none at all, rather than platitudes and "chin up, things will get better" responses. Let's face it, there are some things that just might not get better, and the support comes in commiseration, certainly, but more importantly, in advice on how one might deal with the issue at hand, which just might include ways to learn to live with it.

For my year-and-a-half on meds, I have been extremely fortunate to have suffered few side effects. Now, however, peripheral neuropathy is becoming evident. I have not mentioned it here before because I have found the LW forum to be, shall we say, lacking in concern for some of the more serious topics that have arisen of late. I have loads of questions about how people live with it, but have not felt comfortable asking the questions I want to ask.

I would hope that the forum would not be limited to those infected for 10, 15, or 20 or more years, but rather, might include both long term survivors and older individuals dealing with HIV. The simple fact is that the impacts of HIV increase with both the term of infection and the age of the infected individual. In addition, there is a certain maturity and insight that comes with years, as we grow distant from our invincible former selves, no matter how long you have been infected.

Now, I'm not looking for a Dying-with-HIV forum (though that name might lend the requisite serious tone to the postings contained within). I would just like a place where serious discussions on the topics at hand can take place. The LW forum was like this in the past, but as the site has grown it has become less so.

I would not abandon the LW forum. Hell, I read all of them except the "AM I" forum, since I just don't have the stomach for that. There are things that are helpful to everyone living with HIV, subjects to which everyone will enjoy responding, and then there are darker topics, like surviving, aging, and, yes, dying, that everyone with HIV just might not want to hear. The new forum, should it actually come about, would be a place for the latter, populated by those of us who know that when physicians say "chronic, manageable illness", they mean there is a treatment for it and it's probably not going to kill you for 10 or more years. Not that those years will necessarily be as pleasant as those that have preceded them.

Were I not permitted to post in said forum since I am still a bit of a newbie, I would still find reading it to be helpful. I think it would be a positive addition to these boards.

You mentioned that you are starting to get peripheral neuropathy but don't feel comfortable bringing it up in the Living With forum. For this particular issue, you might try the forum for "Treatment & Side Effects," since peripheral neuropathy is definitely a side effect. I go to this forum frequently and cannot remember ever encountering any rude or nasty behavior there. I've learned quite a bit on this forum and it has also enabled me to provide advice that I hope is helpful. (This new forum consolidates what used to be three separate forums: Treatment Issues, Side Effects, and Lipodystrophy.)

I still believe that a separate forum for long term survivors (or whatever name is chosen) would be an excellent and much needed & appreciated addition to this website.

Were I not permitted to post in said forum since I am still a bit of a newbie, I would still find reading it to be helpful. I think it would be a positive addition to these boards.

I think Joe and others have made it perfectly clear that the new forum being suggested would be open to all members to view and/or participate in. The only members who will not be welcome are those who are unable to show forum decorum and respect to others. And rightly so.

But you all seem to miss the most obvious reason for this new forum. All of you who are eventually to become Long-Term Survivors can monitor the issues that some of believe are paramount in maintaining your health. I would hope that if you were in the forum and had some experience, with an issue being discussed, that you would post in that thread. None of us know it all and I believe that the more we spread out the forums, by interest, the more steady they will remain.

I missed that point at the start of this thread but totally got it further along. Hence my follow-up posts.

Melia

« Last Edit: April 09, 2007, 08:01:15 AM by sweetasmeli »

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/\___/\ /\__/\(=' . '=) (=' . '=)(,,,_ ,,,)/ (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

After careful consideration, and taking into account the overwhelming response in this thread, we've decided to create a "Long-Term Survivors" forum in the next day or two. We're working on drafting a welcome thread, and we'll launch once that process is done.

I do think it's worth noting, however, that there is some skepticism amongst the mods, me included, about some of Joe's and others' statements about being "self-moderated," and that the forum will have an "absolute intolerance for denigrating comments," and it's members will "take care of our own."

Without having the ability to issue your own TOs and bans, exactly how will the members of this forum "self-moderate?"

Let me be clear -- many who are calling for this new forum are some of our most opinionated and strong willed members (that's a compliment, by the way, and probably the reason many of you are now long term survivors). As a group, one or more of you have often been involved in a majority of the flamewars that occur in our other forums. I know you feel you were the ones being attacked, but your consistant involvement might just be indicative of your opinionated and headstrong natures.

Do you really think you'll be able to maintain a "respectful" environment in this new forum, just be willing it? We have our doubts. Therefore, this new forum will be moderated like all others.

That said, we are hopeful that the need for heavy moderating will be much reduced in this new forum. If anything, pulling the newbie vs. oldtimers flamewars off the table should provide a very healthy foundation to build on.

I remain hopeful about allopathicholistic's prediction -- "If this new forum becomes a reality, AIDSmeds will see problems reduced by 60% or greater." However, I think some who have posted in this thread are being a bit naÔve that a bunch of LTS's won't get into some pissing matches sometimes. Given the strong personalities involved, it is going to happen -- let's just hope it's not that often.

When it does, it won't mean the AIDSmeds forums have fallen on hard times -- this old canard has been said by many, on a regular basis, since about 6 months after the forums were first launched in March of 2000. This is just the nature of this very public place -- it feels like it's constantly changing for each of us, but in the aggregate, it's much as it always was (with one big exception -- it always keeps growing). We continue, to this day, to receive a steady stream of emails from folks who feel that these forums have helped them in some way, and even "saved" them. I feel strongly that the credit for this goes to all of you -- those members who post here often, and do their best to help others.

And you have all asked for this new forum, with passionate and well-reasoned posts. I'm looking forward to watching it grow and thrive, and for the more active participation of the Survivors that have been the backbone of these forums.

thanks for posting garyi experience the tiredness sometimes. wondering if you can tell the difference between hiv related and just working long hours or staying up all nighti'm having a hard time telling the differenceyour advice is appreciated

Incognito...

Well I guess the difference would be: transitory...event-specific...as opposed to ongoing. I'd think someone being tired from a long day or night would be easier understood as it's been experienced by most of us. Chronic lower energy from HIV...not experienced by all and hence less understood? One would think it just takes a bit of empathy to understand either situation.

Let me be clear -- many who are calling for this new forum are some of our most opinionated and strong willed members (that's a compliment, by the way, and probably the reason many of you are now long term survivors). As a group, one or more of you have often been involved in a majority of the flamewars that occur in our other forums. I know you feel you were the ones being attacked, but your consistant involvement might just be indicative of your opinionated and headstrong natures.

OR, maybe some of us who have been in this work for most of our time with the bug, tend to have very clear views of what this disease is and what it isn't, and when the "political" network, in all of it's attendant intricacies gets out of hand, many of us stand very strong, and very narrowly on what we know from our past lives and our continuing efforts to make this disease go away. For many of us this is a work that burns in our hearts and minds, and when we are challenged with less than relevant views or posts, we tend to get just a bit touchy.

Peter, you have a long history of standing up for the truth, and for that which will sustain, rather than that which tears down. From our end, sometimes we do become very defensive because of the reach and influence of your own very creation right here. You have provided a very level headed and balanced approach to this present and the coming future, and through your site/medium, we have been invited and allowed to reach our work beyond our bedrooms and beyond any possible scope than we could have possibly dreamed 25 years ago. That being said, it is also important to keep the message clear and untainted with bullshit that only seems to derail and to set back; then we do get testy.

Moderation for the new forum would of course be welcomed, but please be aware that we will also make every attempt to keep the scope and the focus directed, and to keep this forum one of tenderness, support and a place where we can really commiserate about some of the really touchy and strange questions that many of us are in need of answers to. To be able to do this in an environment that is friendly and non-confrontive is mandatory, because many of the threads, I predict, will be totally boring to those not in our station in this disease process.

Thanks for being in the world Peter, and doing what you were created to do. You have done it well, and with a huge amount of grace. May this place continue, grow and prosper.

Love,

(edited for two typos)

« Last Edit: April 09, 2007, 10:10:26 AM by Moffie65 »

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The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

Ya know---not a bad idea. A reoccuring problem I keep tripping over (when I actually stop to notice) is that after living with HIV this long--and becoming one of THOSE "Poster-boy's"...sometimes its good to sit and chat from foxhole to foxhole with folks who have been-there-done-that. SO often many of us who have been around awhile continue to see ourselves (and others see us) as walking-talking resource guides. We spend a lot of time helping others and giving advise--which is great--but too often some of us (me--BIG time) forget we still need the brotherly/sisterly support that can keep us going.

I wonder if an "agreement to terms" message could pop up for the LTS forum like the one for CSI? It wouldn't be about copyright but by clicking "agree" the poster would verify he is a long-term survivor and will respectfully post messages in LTS that are not antagonistic toward those with different views. Even among long-term survivors there are great differences of opinion and experiences but the purpose of the forum is for LTS to discuss our issues.

The agreement box would be a way to stress to posters if they don't belong in the group their messages may be deleted if inappropriate. This isn't a suggestion promoting viral apartheid but if the LTS forum is to be a success it truly must be a safe space for members to post without a "HIV is like a cold" member bashing those who know the truth.

I wonder if an "agreement to terms" message could pop up for the LTS forum like the one for CSI? It wouldn't be about copyright but by clicking "agree" the poster would verify he is a long-term survivor and will respectfully post messages in LTS that are not antagonistic toward those with different views. Even among long-term survivors there are great differences of opinion and experiences but the purpose of the forum is for LTS to discuss our issues.

The agreement box would be a way to stress to posters if they don't belong in the group their messages may be deleted if inappropriate. This isn't a suggestion promoting viral apartheid but if the LTS forum is to be a success it truly must be a safe space for members to post without a "HIV is like a cold" member bashing those who know the truth.

Just a suggestion.

SD

I dont quite think that level of "security" is required. And there already is a TOS agreement and posting guidelines and TO policies and all that. No need to dictate exactly what can be said.

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LIFE is not a race to the grave with the intention of arriving safelyin a pretty and well-preserved body, but, rather to skid in broadside,thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT ARIDE!!!

To everyone, especially Peter, Tim, Ann and Andy, thank you for supporting the new forum and while I understand your scepticism Peter, I hope we can prove most of it unwarranted. I will be the first to admit that I have been caught up in a flame war or two, but in my five years with this forum, I have only one TO and given my sheer number of the posts over the years, I think that speaks volumes about how I conduct myself on these forums.

Of course we expect the new forum to be moderated and we have no illusions that there will never be turmoil, however I must return to this very post to show that in over 135 posts THERE IS NO PRESENCE OF DISRESPECT and look what that has allowed us to accomplish. I'm not sure, but I would guess that it is a site record to go from an inquiry (Ann, Thunter and myself) on the same day (last Friday), to you announcing the formation of the new forum two days later. That tells me we are onto something and hopefully we can present a good example through self-policing that may spread to other forums.

Most important is that we have the chance to start a new forum that hopefully will grow to be as valued and nurturing as most of our forums remain. There will always be challenges when dealing with such different personalities and life challenges, but we have done it before and I know we can do it again.

The "moral" rules for the new forum remain inviolate and is very simple: Treat others with the dignity and respect that you expect them to treat you with. For many of us we have frequented these boards and have agreed to disagree for years without tearing each other apart. There is a time and place for everything and hopefully the new forum will intice back so many of our posters who now lurk in the shadows

To all of you, my heartfelt thank you for supporting this and giving us a place to take care of our own LTSers.

I hope that there is not a split in the Living with HIV forum. There are too many splits in our community. Just once, I would love it if we could all come and work together for a single purpose while respecting the differences in others without having to splinter into a thousand separate groups. Yes, there are differences between someone who has been living with HIV/AIDS for many years and those who were only recently diagnosed, but those differences are superficial. The fact is that we all have the same disease - albeit different stages.

There are so many things that those who have been living with HIV/AIDS can help those who have only recently been diagnosed. That wisdom is something to be shared, savored, and celebrated - not closed up and made available only to a select group.

I can't help but feel like a second class citizen, again. I'm sorry Jim, but you've only been positive for 1 year so you can't play with us. You can't possibly know how we feel so you have to post somewhere else. Someone said once, I can't remember where, that they felt like having HIV so so 80's - now I know how they feel. I said in my introductory post that I felt like a cheater - its great to have it validated.

I know I am against the tide on this one, but this is how I feel and my opinion. Jim

If only your dreams could come true, but many of us dinosaurs have been rebuked (by the newly infected) time and time again for reminding people that this disease is killing some of us and tearing others up to the point that quality of life really sucks. Now I would be all for your point of view if this had not happened to us right here, but it has, it does, and time and time again, we have to simply shut up and talk with each other on the sly and we are NOT provided the room or the leeway to discuss issues of end of life. Unfortunately, these are the facts and this is why this is such a very needed idea.

Love,

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The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

If only your dreams could come true, but many of us dinosaurs have been rebuked (by the newly infected) time and time again for reminding people that this disease is killing some of us and tearing others up to the point that quality of life really sucks. Now I would be all for your point of view if this had not happened to us right here, but it has, it does, and time and time again, we have to simply shut up and talk with each other on the sly and we are NOT provided the room or the leeway to discuss issues of end of life. Unfortunately, these are the facts and this is why this is such a very needed idea.

Moffie, nothing ventured, nothing gained.

Yes, it is true, I have never had PCP, I have never had KS, and frankly I have never had to watch or help a loved one pass because of this disease. But I have had fatigue so bad that I slept for 20 hours a day, I had to change my route to work so I had bathrooms available - just in case. I had to carry a change of underware with me in my backpack - just in case. I joined a gym close to my office so I could use the shower there if I needed instead of having to go home - walking home with shit dripping down the inside of your jeans is something that I just didn't want to do more than once. I suffered from clinical depression, anxiety and paranoia and has suicide ideation. yes, I know these quality of life problems are trivial compared to some, and I would never knowingly or intentionally rebuke anyone for reminding us that this disease still kills (Frankly, I wish someone would have reminded me of that a few years back, even beat it in my head, and maybe I would not be here right now) or for discussing end of life issues. Yes, I know that there are members here that are in the "winter" of their lives and want to talk about issues associated with that and I welcome that discussion; who knows, maybe even us newbies can offer some advice or be of some use, but if you start your own from we will never have that chance!

If it happens, it happens and life will go on. I just think that, if you will allow me to use your word, "dinosaurs" have a lot to offer us "newbies" and "newbies" have a lot to offer "dinosaurs" and I hope that a splinter group will not form.

thank God there are people like you, jk, killfoile and others that will bang our heads against the wall to remind us that we're not invicible and that we're up for a long journey with good and bad and very bad times. Imagine a forum with just newbies...

I don't think the type of "splinter group" you are referring to is going to happen with the onset of this new forum. I am speaking this as a fellow "newbie" (36 and two years into diagnosis). It seems to me so much of this new vs. old business boils down to a matter of respect more than anything marked on a time line. That, and a question of fortune, with "new" and "old" marking how well some people have been able to "manage" HIV / AIDS as opposed to others. And again, so much of that is simply a matter of fortune. I plan on hanging back and reading for the most part once this new forum gets off and running, but I feel safe in saying that I believe when the time is appropriate, I will be able to post in this forum without an issue- simply because I already share dialogue with so many of the people requesting this forum and hopefully have a pretty good grasp of how to participate in the discussions in a respectful manner. As long as people approach the threads with a mind toward dignified communication, I doubt anyone will get turned away for not meeting a quota of days on a calender.

I also want to take this opportunity to thank you and the others, for taking your valuable time, and to taking into consideration the creation of this new forum. I believe it's going to be great ! And, you certainly ask, some very valid questions, as to how this new forum will / can be self moderated. A very simple answer to that is, (and not a very good one) is "time will tell" The forums will still require outside moderation.

There are many here, that are certainly, much more "opinionated, and strong willed", than others, as you have stated. There is no doubt about that.

And there are some of us, ( I certainly include myself in that category.) That would certainly just back off, when we see the possibility of a thread that may be heading into a direction, that could possibly bring up some heated conversation. I have done this many times before on the living with forum myself. Perhaps I will back off less often, and instead , try to work with the others,through PM's in helping to solve a possible conflict, before it really gets heated, and starts heading into that "point of no return area." There will always be things that the long termers, may not agree on,( I believe there is much more that we do agree on) but we all, can at least, be willing to accept others thoughts and opinions, and do so in a mature way. I would expect the same in return from the other members. If I was to perhaps make a statement that that may be controversial, or others may disagree on, I would hope that a good conversation could be the result of that, so that we can continue to learn from each other. It all comes down to respect !!

As I previously stated, I have a feeling, that there is going to be some private messages occurring, to each other,( I mean that in a productive way) especially between those who really wanted this forum. I think that if we PM others, when we see certain subject matter possibly going off track, this will certainly help in aleviating any major problems or conflicts that may occur, before outside moderation needs to occur. I certainly would not be offended, if someone was to private message me and say" Hey Ray, maybe you should take a breather, for a little bit," collect your thoughts" That would not bother me ! I would welcome that !

As Alex has stated, I also believe that the problem and the flaming, and getting caught up in the flaming, can be significantly reduced. Mainly because, most/all that have posted in this thread, realise the overwhelming importance of this new forum, and it's purpose, for all of us long term survivors.

And just for the record, I very much intend, to continue my participation in the other forums as well. I may not always have a lot to offer at times, but where I can help, support, or just share some of my experiences, I will continue to do that !!

I think it's a great idea, with one possible exception. Those that participate in it MUST still participate in the "Living with" forum! Just kidding, kinda. There's a lot of crap that us newly diagnosed are going through that are best responded to by those who've dealt with such issues in the past. In other words, don't abandon the "Living with" forum - we need you 'old timer's' insight and input a lot more than we often let on!

David, I have to tell you that you are a relative 'newbie' but you are someone I respect very much. I agree with about 99% of every post you make, and I feel that you have handled your diagnosis with much grace and humility in the first year. If I had done as well 20 years ago, I'd probably be a super star today! I fell completely apart during my first year, went into complete denial, and buried my head in the sand.

hugs,

Alan

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"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

I think it's a great idea, with one possible exception. Those that participate in it MUST still participate in the "Living with" forum! Just kidding, kinda.

2 years later and I dare say the majority of us do exactly that. Also, at the same time I can think of some LTS folks who decided to depart these forums for good for the reasons raised here, and no I don't mean because of banning.